The Canada Disability What??!!

Does anyone remember the Canada Disability Benefit? Apparently, the government doesn't. 

Which is why this is so necssary.

 

It's long past time to bring this back to the public's attention. 

SO IF YOU WANT TO HELP, HERE'S HOW.

In the meantime, keep on singing. Keep on dancing. No matter how you groove.

NS Family Fights for Future of Son with Disabilities

This video is making its way around FB with good reason.

It is heartbreaking and a true rendition of what is happening in Nova Scotia right now, particularly to those with more severe challenges, such as Brendon.

Breaking News from the National Self-Represented Litigants Project

You might recall me going on a bit in the past about this beast known as "unbundled legal services".



That's what I'm talking about.

But much more importantly, that's what I would be very happy to talk with you about.

'Spread the Word to End the Word'

Post by Lindsay Spilker Tate.

Enough said.

Spoken Word Poetry

An emotional spoken word poem written by a father to his son.




Robb Scott wrote and performed this poem for his son who was born with Down Syndrome. The poem expresses how the R-word changed for Robb and how he hopes he son deals with hearing it as he grows up. The poem expresses how the R-word changed for Robb and how he hopes he son deals with hearing it as he grows up.

Those Least Like Us Have the Most to Teach Us (About Ourselves)

I knew Danny Graham had a child with special needs.
Today I realized that I certainly didn't know the whole story.

'Ensuring the Future of Your Child with Special Needs'

We have discussed various aspects of future planning for our children and other family member with special needs and I know from my presentations that this is a HUGE issue for families around the Province. As well it should be.

As luck would have it, I came across a great video the a few weeks ago, entitled "Ensuring the Future of Your Child with Special Needs". Upfront warning: the video is lengthy BUT I highly recommend watching the whole thing - it will be well worth your time.

Although American, I would say it is at least 80% straight on accurate for families here in Nova Scotia. And, best of all, the presenters (there are three of them) all have children with special needs, in addition to the professional expertise (a lawyer and a financial planner) they bring to the table. This means that they often speak as parents and when they do - trust me, you WILL relate.

"Unfortunately, doing nothing is an action of its own because eventually the future 

becomes the present ... If we have not planned for that eventuality, it will come 

either way and we will have less time to do something meaningful about it."

~ Keith Coldwell, Failure to Plan

Given that the video is quite lengthy, I though it might be useful to break it down into a Table of Contents, if you will. So here goes:

1. Introduction
2. Set Up
3. Greatest Hindrance to Parents Getting Started
4. First Steps (14:15)
5. Five Steps to Plan:

• Letter of Intent 
• Special Needs Trust
• Advance Directives 
• Guardianship 

     6.  The Importance of Communication

If you are a regular reader of the blawg, you will likely be familiar with some of these terms but perhaps not all.

Holding Their Feet to the Fire

There was an excellent interview with Archie Kiaser regarding Nichele Benn's situation on the Global Morning Show today. Unfortunately, no matter what I do, I simply cannot embed it. So I'm afraid that you'll just have to follow the link. Go ahead. I will wait for you.

As Archie so rightly points out, the criminal justice is simply not geared to deal with people with mental illness and intellectual disabilities. In his words, it's all about "judging and punishing" and, in this case, that's not going to do Nichele or society any good.

In my words, shame on the Department of Community Services, Quest Regional Rehabilitation Centre and the Crown prosecutor involved for creating this situation in the first place.

Think about it - the comparison of Nichele's situation to that of Ashley Smith isn't that far off the mark, is it? Is this what Nova Scotia will become known for? Will/Can we allow this to continue?

There is obviously much more to be said (and done) on this subject, but I'm afraid I must leave you for now - Part II on the Criminal Justice System simply isn't going to write itself, is it?

Do. Not. Limit. Me.

Wow, what a great video! You tell them, Megan.



So what say you? Let's distribute this far and wide.

Share it on your social networks. Share it with your friends. Show it to your children.

But, most important of all ...

Do. Not. Limit.

Anyone.

H/T to Ashley's Mom at Pipecleaner Dreams

Cross-posted at Free Falling

When Words Fail Me ...

This video speaks for itself.

But the saddest scariest thing is this woman is not alone. She may be the only one brave enough to actually type and deliver such a letter, but I can guarantee you she's not the only one who thinks such thoughts.




Perhaps most of those who do would never suggest that a child, any child, should be euthanized or his "non-retarded body parts" donated to science. But they wouldn't hesitate to express their belief that such children should not be going to their neighbourhood schools, should not be participating in the same extracuricular activities as their "normal" children do; perhaps, even should not be taking up scarce dollars in our healthcare system.

We would like to believe that human beings are inherently good. That, most of the time, if we just give them the chance, they will do the "right thing".  Maybe we're right - maybe most are.

But something like this has to make a parent wonder how many more monsters are hiding in the darkness or behind the annonimity of their keyboards. And shudder at the thought.

H/T to Krista Lettues for the video

Cross-posted at Free Falling

A Voice in the Wilderness?

This homegrown video was created by a small group of parents with support from the Progress Centre for Early Intervention in an effort to raise awareness for the need for improved services for children with special needs.





Let's hope it's more than just a voice in the wilderness.

Failing to 'Educate Peter"

I came across this video in a blog post entitled "Is Full Inclusion a Good Idea?".

And after watching the video, I completely understand why they felt the need to ask the question. Go ahead and watch - I found it both fascinating and appalling.



So tell me, please, how can anyone, for even one minute, suggest that this is "inclusion"?

Where was Peter's aide? They didn't really expect one teacher to handle him and the rest of the class, did they? Didn't he have an IEP (IPP)? A behavioral plan perhaps? Why where there so little consequences attached to his behavior?

I was shocked to see Peter get away with kicking the other boy in the face. And as the parent of a mentally challenged child, I would be mad as hell to have seen her "educated" in this manner. You and I know that they weren't doing Peter any favors. He needed to be taught appropriate behavior and that actions have consequences.

That they put the other students and his teacher through that was unbelievable. That they put Peter through that was unforgivable.

And how about teaching him that the way we interact with Dad (for example) is not the way we are to interact with other kids (the hug and kiss with the apology)? After watching the end of the video, I totally got why Peter would jump on the backs of the other students - it was a game he played with Dad.

I suppose it might be argued that at least some good ultimately came from their methods based on his behavior four months later, but ... really??

Perhaps we should spread this video around as an example of how NOT to educate our children.

Oldies But Goodies

Check out this list of  Psychology For You* parenting videos available from the IWK.

And don't forget to check out their list of Upcoming Presentations!

• An Overview of a Treatment Approach for Children with Autistic Spectrum Disorder (Feb 9/09)
• Parenting the Young Worrier: Tips and Strategies (Jan 12/09)
• Parenting Youth with Chronic Illness (Nov 24/08)
• Early Detection and Treatment of Children with Autistic Spectrum Disorder (Oct 6/08)
• Too Scared to Speak: Helping Your Child Overcome Shyness or Selective Mutism (Sept 22/08)
• Helping Children Cope with Anxiety and Fears
• How To Talk To Teens About Weight in a Weight Obsessed World (Dec 7/07)
• Seeking Common Ground: Managing Challenging Adolescent Behaviour (Nov 20/07)
• Hands-On Strategies for Helping Children who have ADHD (Oct 23/07)
• Getting Your Children to School when they Refuse to Go (Sept 18/07)
• Stress Management and Relaxation (Jun 12/07)
• The Stepparent - Stepchild Relationship: Strategies For Helping Youth Adjust To A New Family (Apr 17/07)
• "Mom, My Stomach Hurts!": Helping Children With Recurrent Pains (Jan 16/07)
• Navigating the School System: The Art of Advocacy for Parents of Children with Special Needs (Oct 3/06)
• When Your Children Fight (Sep 12/06)
• Parenting Children With Behavioural Difficulties (Apr 25/06)
• Eating Disorders: Why Treat Children Differently Than Adults (Feb 28/06)
• Treating Childhood Obesity: What Parents and Professionals Can Do To Help (Jan 10/06)
• Sleep During the Early Years: Common Difficulties and Strategies to Help (March 2009) 

* Psychology for You is an education series provided by IWK Psychologists as a free, public service to the Maritime Community. The videos above are recordings of previous presentations from January 2006 - March 2009.

Where I'm At ...

A friend recently pointed out that I haven't been posting much on the blawg. No surprise there, I knew that. But after giving it some more thought, I thought an explanation might be called for.

First things first, I have not given up on this blawg. I cannot imagine ever doing so ... strange as it may sound, it's my baby. I have been doing this for over 4 years now and will continue to do it for many more. Perhaps for as long as it's needed. Wouldn't it be nice to work myself out of a job? Well, a girl can always dream...

But the reason I've been posting less often recently is two-fold:

• I recently took on some new temporary contract work. The work will only last a few months (and I'm pretty well half-way through it now) but it seems to be incredibly time-consuming. I'm actually enjoying the work (Learning Guide Facilitator for a portion of the Bar Admission Course - fancy way to say teacher/marker) but it seems to suck up the little "free time" I had. Fortunately, however, it won't be permanent.
• Secondly, my work situation is in a bit of state of flux at the moment. Between now and the end of April I will be ending my work as a digester for the Barristers' Library - sadly, they have made the decision to get out of the publishing business. But on a practical level, that means I am trying to do as much work for them as I can at the moment. The well will soon run dry.

So that's my story and I'm sticking to it.

I feel bad about not posting as much as I would like (as I've said before, the problem I generally face is lack of time, not lack of material) but I am doing my best to keep the "Places To Be" section  in the sidebar up-to-date. So might I suggest that if/when you check in to see there are no new postings, you scroll halfway down the page and check out "Places To Be".  You might just be plesaantly surprised.

HACL has been (and continues to be) busy with a series of workshops for parents - personally, I am looking forward to the Circles workshop on Saturday, March 24th.  There will also be an "Emotions to Advocacy "workshop on April 21st (material from Wrightslaw - I hope everyone is familiar with that site).

I will be giving another series of presentations on The Henson Trust and Supported Decision Making and Legal Guardianship in Nova Scotia on March 31st, this time in Clare, so if you happen to live down that way, I would love to meet you!

And who could forget the Autism Awareness Centre's Workshop coming up April 13th and 14th.

And for something totally different (at least I've never seen such a thing before), a Big School" Here I Come! program will be held August 21 -23, with orientation on June 9th. For children with a physical disability or acquired brain injury (psst ... my experience is nobody sticks to those guidelines all that much - I would suggest giving them a call if you have a child with autism or intellectual challenges or ... you get the picture) entering elementary school in September 2012, the program is to give them a chance to work with a team of rehabilitation professionals on skills to increase their independence and prepare them for “Big School”.  Sounds cool... wish we had something similar when my two started school. Would you believe my youngest turned 16 today?  Where does the time go?

And that's just a taste of the items in the sidebar under "Places To Be". So please do check them out.

And hang in there with me ... we will be back! After all, where else would I go?

Posted Without Comment

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Yes, They Can

The Council for Exceptional Children holds an annual "Yes I Can!" competition.

This year 27 students were selected for excellence in one of nine categories: academics, arts, athletics, community service, employment, extracurricular activities, independent living skills, self-advocacy, and technology.



You can read about each of these individual's accomplishments on the CEC website.

And yes, two of them (Jake Anthony and Darlene Jakubowski) were Canadian. Interestingly, both from British Columbia. Something tells me that might just be significant.

At any rate, it reminds me of the old adage ... "Never Give Up".

H/T to the ed Week "On Special Education" Blog

The Power of Words

Have you heard about the campaign to 'End The "r" Word'?

Personally, I think it might be a little over the top. For the simple reason that it seems to attempt to paint the use of the word as "hate speech".

Don't get me wrong, I do have a big problem with people throwing around the word "retard", be it unintentionally and casually or in a mean-spirited way. Always have, ever since I was a child. Growing up with two severely challenged older sisters, I suppose that's not too surprising.

It's just that I tend to approach most things from a legal point of view. And coming from it that perspective, I find it a little over the top to attempt to label it "hate speech". Although it might well fit the Wikepedia definition, I have a little more trouble rounding it with the legal [Criminal Code] definition.

Public incitement of hatred
319. (1) Every one who, by communicating statements in any public place, incites hatred against any identifiable group where such incitement is likely to lead to a breach of the peace is guilty of
(a) an indictable offence and is liable to imprisonment for a term not exceeding two years; or
(b) an offence punishable on summary conviction.

Wilful promotion of hatred
(2) Every one who, by communicating statements, other than in private conversation, wilfully promotes hatred against any identifiable group is guilty of
(a) an indictable offence and is liable to imprisonment for a term not exceeding two years; or
(b) an offence punishable on summary conviction

And although it may well fit within the definition of what has become commonly known as "hate speech" under sec. 13 of the Canadian Human Rights Act, I have a lot of problems (both from a legal and personal point of view) with that section.

That being said, I'm more than happy to point you in the direction of some rather cool opinion out there on the subject. From those who have the most right to object and tell all of us exactly how they think and feel on the subject.

But my own opinion on the campaign aside, it's hard to argue with the premise that the words we choose are an expression of our values and that much hurt and harm can be caused by using hurtful language. And whether or not we can stop the general public from throwing around the word as an insult, there can be no argument that it's high time the Nova Scotia government woke up and changed the centuries old wording of some of our provincial legislation.

For example, over the years, the wording of the Incompetent Persons Act (which is the legislation under which a person would apply for a guardianship order) has been more than enough to make a person's stomach churn. Fortunately, that legislation has been recently amended to remove the references to "lunatics", the "insane", "insane and dangerous persons" and one of my personal favourites, "dangerous idiot".

And although some might still take offence to the new and improved language in the Act which now uses the word "incompetent", it is a huge improvement. And, personal feelings aside, legally accurate. So perhaps we are getting there, slowly but surely.

In a similar, but much more far-reaching vein, United States Senator Barbara Mikulski is attempting to remove the words "mental retardation" and "mentally retarded" from that country's federal law books and have them replaced with “intellectual disability” and “individual with an intellectual disability”. This with a piece of legislation known as "Rosa's Law" which has an interesting bit of history behind it.

Rosa’s Law replicates a law recently adopted in Maryland. Senator Mikulski first heard about the state law from Rosa’s mother during a roundtable discussion about special education held in Edgewater, Maryland. Due to requirements in the Individuals with Disabilities Education Act (IDEA), each student who receives special education services at public schools has an individualized education program (IEP) that describes the student’s disability and the special education and services that child will receive. Rosa has an intellectual disability – Downs Syndrome – and so was designated as a student with “mental retardation” in her IEP, giving way to people at the school referring to Rosa as retarded. Senator Mikulski promised Rosa’s mother that if the bill became law in Maryland, she would take it to the floor of the United States Senate.

“This bill is driven by a passion for social justice and compassion for the human condition,” said Senator Mikulski, a senior member of the HELP Committee. “We’ve done a lot to come out of the dark ages of institutionalization and exclusion when it comes to people with intellectual disabilities. I urge my colleagues to join me to take a step further. The disability community deserves it. Rosa deserves it.”

“Mental retardation” and “mentally retarded” are terms commonly used in federal laws, including the Individual With Disabilities Education Act, the Higher Education Act, the Elementary and Secondary Education Act, also known as No Child Left Behind, and the Rehabilitation Act of 1973.

And just in case anyone out there really wonders why it matters, perhaps they should take a moment to listen to Rosa's brother. Out of the mouths of babes, indeed.

When Rosa’s Law was being considered by the Maryland General Assembly, Rosa’s 13-year-old brother, Nick, successfully testified on her behalf for a substitution of mentally retarded with intellectual disability. He explained, “Some people say they are just words, and it’s not going to make a difference if we just change the words. Some say we shouldn’t worry about the words, just the way we treat people. But when you think about it, what you call people is how you treat them! If we change the words, maybe it’ll be the start of a new attitude towards people with intellectual disabilities. They deserve it.”

And now, if you don't mind, I would like to leave you with one of my personal favourites. Short. Sweet. And to the point.



Really, what more is there to say?

H/T to Pipecleaner Dreams

Just Let Us BE

We've talked before about prenatal screening, particularly as it relates to children with Down Syndrome, although it really could apply to any of our special kids.

We've talked about the importance of signing the Petition to have the federal government pass a Prenatal Diagnosed Condition Awareness Act.

And now, now we can watch



and see exactly what we're talking about.

Now That's Different

Never underestimate the power of the internet, they say.

And apparently they're right. As I just received this link to a Bank of Montreal youtube video promoting the RDSP. Admittedly, it's a little dry but check it out.




And a quick perusal around youtube found me this second video.



Anyone care to meet Jack Styan, the Preisdent of PLAN?

With thanks to Dorothy Kitchen, for the link to the first video